In 2002, at the age of twenty-four, the writer Mike Scalise was walking around Brooklyn enduring a nine-hour headache so debilitating he went to the emergency room. He thought it was just a bad migraine, and while one of his first concerns that he expressed to his doctors was his lack of health insurance, things became serious when they later informed him that he had acromegaly, a rare hormonal disorder which results from the body producing an excess of human growth hormone, and that this “migraine” was actually a pituitary tumor that had just ruptured, which led to a pituitary apoplexy, aka, bleeding in the brain’s cavity near the pituitary gland. Scalise’s memoir The Brand New Catastrophe (Sarabande, 2017), which was published last week, begins that day in a Brooklyn ER and follows Mike as he has his tumor removed, his recovery and navigation of his care of adrenal insufficiency, the medications and parade of doctors, and also, his life as a writer and burgeoning adult, who, like anybody else, experiences a lot of struggle and self-doubt. The book is an intimate portrayal of everything from teenage romantic love to generations-old family resentments, and a mother-son rivalry full of mutual respect and animosity, competitiveness and warmth, all within the lens of a medical biography.
Because of the honest rendering of these intimate relationships in his memoir, Scalise’s book is hilarious and brutal, charming and very touching. This is also, in many ways, a medical story, but it’s far from being a text strictly for the endocrine community or people interested in hormone disorders or caretaking practices. It is for anyone who seeks an honest and beautiful narrative.
I was curious, though, how Scalise, being a writer and not a medical professional, was anticipating the medical community’s response to his memoir. He spoke to me about his not only about his process in writing the book, but also how to tell your family you’re publishing a story that includes personal details from their life, and how this work brought him closer to a community of people whom he shares a rare commonality with—as Scalise said in his book, “a fraction of a fraction of a fraction.”
David Plick: What was it like writing about things while you were currently experiencing them within the context of a large project like a memoir? Like, we experience so many things in our lives, how could you distinguish the things in your life that would go in the book from the things that wouldn’t?
Mike Scalise: I wrote the events at the end of he book in very short succession after they happened, which at times was a kind of frustrating waiting game. I found that to be the hardest challenge in writing a memoir—the fact that I knew I really wanted to focus in and get work done, but there’s a lot of process that needs to happen. Gaining perspective is a passive act. And writing is an active one so you find that these work against one another. And meanwhile, all my friends are writing fiction and poetry, and they were really prolific. So it felt like I just had to walk around and wait for the perspective to find me for the project.
The things that happened earlier in the timeline took a long time to present themselves to me in a way that works on the page. But once I did realize how to begin the framework, the rest of the book fit into place rather easily. I’d say the last third was written more as it happened. It wasn’t free flowing. It wasn’t associative. I think that I just had built a sensitivity towards the work so that while events happened I was already aware of the story I was writing about. Ta-Nehisi Coates said that he thought so deeply about the issues he was writing about and was so energized by it that when something would happen to him or in the culture that would fit into those boxes he already constructed he would be able to respond very quickly with a perspective and intelligence that is already there. So I think when you attune yourself to a project, you can write about what’s happening in your daily life. I just think it’s a really long process to get to that point.
David Plick: Something else I was really impressed with was the sense of narrative in the book. How do you create that story arch when it’s something so close to you? How do you distinguish the events in your life that form the narrative arch from the things that don’t?
Mike Scalise: I think there are two things that happen. One is that you can tell when you’re experiencing something that you’re going to write about it. You don’t know when that’s going to happen. You just know that it has to happen. The air has changed in the room. People are revealing themselves around you in a way that is very intriguing, and you can’t quite figure it out and you know that later on, at some point, you’re going to sit down and give it your best shot. So, that had happened with a number of things I wrote about in the book. Maybe I didn’t know at the time that it was going to go in this memoir. I just thought of it as a bookmark.
There are so many people in my life, and I didn’t know if they would take the form of fiction or if I was going to write an essay about them. There were parts of this memoir that I tried as standalone stories. But then, after a while, I started to adjust to the idea that I am writing a book on an exploration of my illness and how it affects the universe that surrounds it. Intrinsic to that exploration is the fact that I’m writing about my relationship with my mother and father, and how we learned how to interact as adults with each other. I’m not in the center of that relationship. It’s actually a tug and pull, and once I realized that, it was just a matter of following what my family wanted and presenting that in relation to what was happening to us at that time.
I didn’t know that the later parts of the story about my family would go in the memoir initially. I would try it out and then start seeing that there were all these connections. And the next thing I knew I had my next chapter. It’s kind of surprising because you didn’t realize you had your life sewn together in that way before. And that changes how you remember things as well.
Also, I don’t think you know how elements of your life fit into the story until you have a manuscript. I had a professor early on in my graduate program who explained that once you’ve locked into a story you grow this kind of sixth sense to it, what belongs to it. She told the story about the moment she was standing on the street with her husband, where over the course of a conversation with him she realized that A) she was going to divorce him, and B) she’d go on to write about it.
David Plick: You mentioned before that you were doing research for your book. What were you researching?
Mike Scalise: An early, failed draft of this project was a narrative biography of Andre the Giant. I pitched this idea to Bucknell University and had the opportunity to take a fellowship, which gave me access to their library and interlibrary loan system but that project didn’t work the way I thought it would.
David Plick: Why?
Mike Scalise: I found out, while I was researching, that at that time, information about Andre’s story, at least enough to write a book, wasn’t available or accessible enough for me to write. It was a failure that I didn’t know what to do with. I had done all this research into Andre, but I also had done a lot of research into other public acromegalic lives, as well as the history of the disease, early treatments for it. So I had these huge folders of research at this failed attempt at what I thought was going to be a limited first-person, long-form personal biography of somebody else’s life. But then I realized that what had to happen in order for me to tell the story that needed to be told was to step closer to the center and restructure it around myself as a memoir, which was a bit of an adjustment. I was a journalist for a really long time. So I approached memoir a bit reluctantly. It was a bit of an education.
The stuff that I had to read to prepare shifted drastically, but what didn’t shift was all this research on Andre the Giant that I had done at Bucknell, which ended up being reduced into what I think came to about 4 to 5 pages total in the finished book. I had the luxury of having already done all of that work. I just had to see the project through new eyes.
David Plick: I was writing a novel with my mother as the central character, and I’ve become hesitant to finish it because I started to become afraid to put her business out in the street like that. How did you approach your family, friends, or even doctors about the personal things that are in the book?
Mike Scalise: It was on my mind a lot while I was writing it. I didn’t tell anybody in my family what I was doing because I didn’t want to make it a thing prematurely. I was a little bit superstitious about whether or not the project would be a success or not. I didn’t want to enter into the conversation that I needed to have with them, and ask people who love me to have to adjust to the fact that a book may be written about them if that wasn’t going to be the case. Ultimately I think it was a really good decision because it allowed me to write about them in an honest way, in a way that I thought would never be public, so I was able to write about it as though it was just literature, which is what it has to be. Literature works the way it works. You need to display empathy on the page regardless. So, even if I did have any resentments, it wouldn’t fly on the page because my resentment is only one part of the story. You have to love each character into existence and so when I finished a draft of the book, that’s when I told my family. Some wanted to read it, some didn’t want to read it. At the time I think I was surprised with the ones that didn’t, but after time had passed, I realized that if somebody you are related to writes a book about their lives and puts you in it, you are allowed to feel however you want to feel about it. I had no one in my family respond terribly to the book, and I have not been excommunicated from any Scalise family gatherings yet.
David Plick (laughs): That’s excellent news.
Mike Scalise: Thanks. Some people ask me, “Was the book a document where you could sit and heal wounds with your family?” And I don’t think it necessarily works that way. It’s so fundamentally weird to have a book written about you, and however somebody reacts to that is completely understandable. The author also has to be really understanding of that. That’s just how it goes.
I’ve been very surprised at all of the support from my family. The story takes place during the worst part of my mother’s life. It wasn’t a great time for my father overall, or my brother, or my wife. And they’ve all been very encouraging.
David Plick: The empathy between you and all the characters in the book really comes across.
Mike Scalise: Every character in this book had a profound impact on me, and I wanted to honor that. Hopefully they see the same thing you see, but if they don’t, that’s ok. I think a lot of the time with family issues, when people have resentments towards one another, it’s because they’re not being heard. And in a book you can let anyone be heard. Ultimately, I know that everyone is trying to do their best, and that’s a noble cause.
David Plick: A lot of memoirs are written not by writers but by people who experienced something extraordinary or interesting enough to write about. But you were a writer before you experienced this extraordinary thing, and a good portion of this book is about being a writer: being a freelancer, going to an MFA program and hipster parties in Brooklyn—things not really having anything to do with acromegaly. I know that you are very involved and familiar with the literary world, but how are you engaging with the medical and endocrine community with this book?
Mike Scalise: That has been really interesting. I only really know how to interact with the literary world, so the newer part of this for me is the medical thing. I was invited by a former doctor of mine to give a presentation last September in Baltimore to a number of people who were enduring similar experiences to mine. It was the first time I was delivering this information to people who were similar to me medically. And I’m really nervous about their response to the book because it wasn’t necessarily written with them in mind. It was written to explain my situation to other people.
Also, I didn’t pay attention at all to the endocrine system while I was going through all this. I was very happy to sit there and nod my head while my doctors said really smart things, and just take the medicine they gave me, or not take the medicine they gave me. And when it came time to write the book one of the biggest challenges was tapping into that information in a way that is useful. So, I was extremely nervous that I got everything right.
I learned a lot through connecting with adrenal insufficiency communities—about what it means to live with this, things that I didn’t know even as I was going through it. The acromegalic community has also been very responsive.
At the time when I was writing it I didn’t seek out these communities, and I think that was short-sighted. But now that the book is done and I’m able to make these connections, it’s fantastic. It’s a great conversation starter where I get to learn what’s happening beneath my skin.
In terms of getting the medical stuff right, what I did was I got a fact checker, a former student of mine actually, who was well-trained in the endocrine system. She gave my book a thorough scrubbing. Beyond that I sent it out to doctors I had or even currently have, and they’d give me feedback. I found myself more nervous about their response than my writer friends. I knew what buttons I needed to hit from a literature standpoint but in regards to representing an unsung disease in a really unsung community and communicating what their issues are on a day to day basis, I was really happy to find out that the things I did get wrong, I was able to fix, so I could paint the picture in a way that hasn’t happened in the endocrine industry.
David Plick: What did your doctors think about your book? Did they think it was funny? Were they charmed by it?
Mike Scalise (Laughs): My current doctor gave me a really thoughtful reaction to it. The thing is there are so few books about personal experiences with acromegaly or hypopituitarism so that I think doctors and endocrine researchers I go to saw it as an opportunity to get more intimate information because they mainly focus on scholarship. Since one-on-one interaction between them and their patients doesn’t typically last that long, as a result the testimonies they get aren’t as close as what they get in a book like this. My current doctor, for example, knew that sweating profusely is a symptom of acromegaly, but she didn’t realize the extent of it. So when she was reading the sections where I was sweating through pant legs, or changing shirts before and after job interviews, she didn’t know it was actually like that.
David Plick: Has anybody with acromegaly read the book yet?
Mike Scalise: Yes. As a result of the connections with the community that I’ve made, there are some people who read it, not only with acromegaly but also some people with Cushing’s syndrome, which is a condition where the endocrine system produces too much cortisol and the result of that is often hypopituitarism. People in both of those groups have read it and responded really well, and it turns out that some of the people in those groups are going to be coming to the readings that I’m doing in the next couple weeks. I’m really excited about it. The book is only a starting point. It’s going to sound a little hokey, but I didn’t know that there are other people out there like me. It’s really nice to connect and hear stories, figure out how other people are doing, share things, and hopefully help each other out. That’s been a great surprise to me. I’m still learning the language of this group to be honest, but it’s a community I’m very happy to be a part of.
